Shaping Autism Research — On Day Two of the London ESRC seminar,...

On Day Two of the London ESRC seminar, participants divided into groups to discuss how we can build capacity for (a) autistic people in developing skills in research and (b) early-career researchers* in developing skills in engaging the autistic community.

Below we briefly summarise the points raised by each of the groups with regard to potential opportunities and barriers, and ways we can work towards building capacity in both groups (which may not be mutually exclusive!).

Building capacity for research in the autistic community

Language has to be acceptable and accessible
funding and alternate models and seek to influence existing models
Need to build long-term and sustainable trusting relationships
Universities need to cater for autistic people’s basic needs before people can be researchers
How do we define “autistic community”?
Maybe an opportunity is for autistic people to do research about research
Not all research is about quantitative methods. Statistical differences are important but we need qualitative research that makes a significant difference to people’s lives, not just in a statistical sense
Academic systems (publishing, funding, careers) are often alien to autistic people. Training the autistic community in research methods as well as training researchers in participation are both needed to create a common language. Often attempts to make changes are ineffective because both sides lack this common language.
There need to be sustainable systems, not one-offs.
Universities get away with very tokenistic ‘impact’ for things like the Research Excellence Framework (REF)
If funding bodies didn’t accept this, autistic people might be more meaningfully included
The research councils are unwilling to change, somebody said they ‘can’t’ but they meant ‘don’t’
Researchers can only do what funders decide
Funders and researchers don’t like ‘accidental’, ‘exploratory’, ‘unpredictable’, ‘pointless’ research
Research councils sometimes only fund universities
Having partners in research who are friends is hugely beneficial
Autistic people should be given chances
personal and institutional
Academics can provide services
Academics can support the creation of autistic representation
Parents of children on the spectrum have huge motivation and sometimes choose questions other than traditional researchers, true of autistic people too
Worth overcoming challenges to include these people –> The Arts are doing this, although people don’t always recognise this research

Building capacity for engagement in early-career autism researchers

Need to look for overlaps with respect to your expertise (as researchers) and community priorities.
For funders, may use participation but may not be a big selling point for them - they may not care. Emphasise outcomes.
Need for mentorship, especially around ‘speaking funder language’ and doing/funding participatory work.
Need for creativity in grant applications (e.g., Wellcome Trust arts and sciences grant schemes)
Many parts of scientific community (excluding animal model people) may never have met an autistic person. Events, grants, something to bring them together?
Looking for guidance: who have you read whose works ‘resonates’ with you? Contact them!
Also need for monitorship of Principal Investigators on how to employ/manage/develop employees on the autism spectrum. How to support them?
Value in acknowledgement of autistic people/researchers as equal partners
“Unbelievable" prejudice against autistic people/researchers
Challenge to secure resources as an early-career researcher - money going to senior people, centres. Able to smaller projects?
Calls for autistic people often light on information regarding research purpose/dissemination
Hard to ‘step out’ of current research areas/experience - am I right person to do this (participatory) project?
Lots of funding options are very medically oriented
Official university supports may be of limited use - even harmful - to autistic researchers. What then?? Need to share good practice back to these services?
Lack of understanding of equal opportunities legislation –> accommodations can be easy but some may require central coordination (e.g., room lighting).
Need to teach people how to get funding. Teach people what will be required of them.
Same expectations across different fields (medical, social)?
Lack of knowledge of government/university supports
“Don’t know what to do!”A challenge to people who have that expertise to share it
A barrier to even showing up as a student
People are sick of it!
Start at other end with a cohort of people and topic that matters to them
Engage funders by engaging the community
Who can conduct participatory research? (PhD students? But limited funding)
What is feasible at different stages of career?
What can institutions, senior researchers do?
Hire broader age groups, more experience, change unspoken selection criteria
Have PhD programmes for autistic individuals and overcome barriers —> proactive support to include autistic community
Participatory research/engagement can be conducted in various ways and levels (feedback, conversations)
Professional organisations (e.g., British Psychological Society) should already start to support these endeavours
Connect with the autistic community (e.g., at conferences) –> building relationships/networking
Early-career researchers are the ideal starting point –> the future of autism research
We need cross-disciplinary, collaborative research, including both qualitative and quantitative research
Not too much burden on early-career researchers –> develop an early-career network
Funding –> need small pots of money!

*Early-career researchers are those who are at the beginning of their academic career. There are different definitions of what “early career” means but it generally refers to people who have less than 4-5 years research experience following completion of their PhD (post-doctoral). “Early” does not necessarily mean young!